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After Toddler’s Death, Connecticut Family Channels Grief into Action

Couple pushes for newborn screening law.

From left, Lee Florian, Peggy Sayers (deputy speaker of the Connecticut state House), Emma Florian, Eliza Florian, Adam Florian (holding photo of Joshua) and Ben Florian. Credit: Submitted photo courtesy Florian family.
From left, Lee Florian, Peggy Sayers (deputy speaker of the Connecticut state House), Emma Florian, Eliza Florian, Adam Florian (holding photo of Joshua) and Ben Florian. Credit: Submitted photo courtesy Florian family.
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This article was reported and written by Lisa Lenkiewicz.

Four years ago, Eliza and Lee Florian’s two-year, two-month and two-day old son Joshua Seth was ill with a simple fever when he suddenly died. After his death, the Florians learned he had ALD—Adrenoleukodystrophy—a fat metabolism disorder that, if detected, can be controlled with diet and medication. 

The neuro-degenerative disease affects boys and is typically discovered between ages four and six. When diagnosed after age four, the disease usually develops into severe brain damage and loss of all muscular control.  Or, like Joshua, a seemingly healthy child can die suddenly of ALD. But had Joshua undergone a newborn screen, say the Florians, he could have had early treatment and a chance to live a normal life.

Since his death, the Florians have worked tirelessly to get a bill passed through the Connecticut legislature requiring a simple screening test. The goal is to have newborn screening for ALD added to the approximately 40 other diseases that are routinely screened for at birth.  

Granby residents and parents of three other children, the Florians have joined with two Connecticut families and have garnered public support to make legislators aware of the need for this newborn screen. The bill is out of committee and awaiting a vote in the State Senate and House.  

The Florians have created a Facebook page, to campaign for the cause. Lee Florian is a nurse at the UConn John Dempsey Hospital and has elicited support from major hospitals and nursing unions.

“One voice is a whisper, but many voices in unison are a shout to change the law,” said Eliza Florian. “Our family will not stop until all Connecticut newborns are safe from this devastating disease. And when Connecticut passes this bill, we will keep moving forward to support this effort across the United States.”   

We’re dedicating the month of April and May to telling the stories of people locally and statewide who have overcome the impossible, affecting positive change in their own lives, or in communities. Sponsored by Grape-Nuts.

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